 ACA Gearing Up for the New Year
by Morgan Sheets, National Advocacy Director
The past couple of years have been an exciting ride for the Amputee Coalition of America’s (ACA) advocacy department. We have built a national campaign from the ground up. At this time, we are advancing prosthetic parity in more than 30 states. There are seven laws on the books and we are putting the final touches on the language for a federal parity bill to be introduced in Congress in 2008.
The ACA is working with a number of partners at the national level to make this a reality. Meetings have been held with several key leaders. We are working with activists in states like Wisconsin, Louisiana, Delaware and Michigan to encourage targeted lawmakers to support the bill by signing on as original co-sponsors. That basically means that they are throwing their support behind the legislation. Our goal is to have a broad cross section of sponsors from different areas of the country, as well as representing both Democrats and Republicans.
Launching a national bill is an important step toward meeting the ACA’s goal of ensuring access to prosthetic care. While we remain committed to the state legislative campaigns, there are certain insurance plans that fall under federal jurisdiction. We need to pass a law at the federal level in order to impact the coverage available in all private insurance plans.
We are excited to take this fight to Washington, D.C., the site of our national advocacy office. The success that we have had throughout the country has really enabled us to make this bold move. We could not have done any of this without the dedication of our funders, coalition partners and, most important, our hard-working activists.
As we celebrate the New Year, we have a lot to look forward to. We are introducing brand new resources and pages for both the state and federal campaigns on our online Action Center. We just started a Letter to the Editor drive. We have signed on new coalition partners for the federal effort. We have already seen the difference that parity bills can make in the lives of amputees and their families. The ACA will continue to fight for access to care for amputees of all ages.
 The advocacy department has been working on a Letter to the Editor Drive in support of the federal parity bill that will be introduced in early 2008. Supporters in Utah, Kansas, Oklahoma, Illinois, Michigan and New Jersey have sent letters to Congressional legislators as well as local and national newspapers. We are happy to announce that of all the letters submitted to editors, 10 percent of the submissions have been successfully published! If you would like to submit a letter to your legislator or local newspaper in support of prosthetic parity, please e-mail federal@amputee-coalition.org for details.
 Remember the Amputee Coalition of America in your holiday and end-of-the-year giving this year. Your donations help support programs for the 1.7 million Americans living with limb loss, and are tax-deductible as permissible by law.
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You can donate on our Web site (www.amputee-coalition.org/advocacy/donation).
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You can also send a check payable to “ACA” with “APPLL” in the subject line or in a note included with the donation to: Amputee Coalition of America, 900 E. Hill Ave, Ste 205, Knoxville, TN 37915.
This month’s Activist Corner features an article by Susi Jones. Susi knows firsthand what families go through to provide prosthetic care for their children. She and her family are working hard to make sure that children like her son, Dylan, get the care they need to live active lives.
 I am honored to be the mother of Dylan Micah Jones, who will turn 5 years old this January. Our family is Dad (Bill), Mom (Susi), Big Brother in college (Ryan), Onyx (our black Lab) and Dylan, also known as the Jones Family. Dylan was born with “fibular hemimelia,” which means he has no fibular bone. At 6 months old, Dylan underwent a Syme amputation, which included having his crooked tibia bone broken and reset. At 10 months old, he acquired his first “fast leg” (right below-knee prosthesis), and now, 4 years later, he is already on his seventh fast leg!
One of our biggest fears when Dylan was born was how to handle people and their comments, staring, whispering, etc. We used this fear and soon learned it didn’t matter how others reacted − what mattered was how we responded. We prayed, read, researched, and listened to various providers, took classes, joined support groups, and spoke with other families and amputees every chance we got. Because of Dylan, and how comfortable he is with his fast leg and his outlook on life, we were able to face our fears. Dylan has taught us so much about love, courage and overcoming monumental obstacles. We’ve learned that it doesn’t matter what others think − what matters is who you are and where your heart is. Dylan is a wide-eyed, smart, wonderfully outgoing, outspoken and beautiful little boy that God made just so that he can change the hearts and lives of others. Dylan captures peoples’ hearts wherever he goes, not because of his leg, but because of who he is.
 As a family, we try to ensure that Dylan always gets the best possible care so that he is never hindered by his disability (amputation). We also try to educate others about what someone with an amputation can do, and looks like, every chance we can. When it comes to hands-on teaching, Dylan is the lead educator; he is open to take his leg off anywhere and holds his own session on how a fast leg works along with answering inquisitive questions others might have. When our family discusses amputation, we tend to use humor and openness to create an atmosphere for any questions. We also try to throw in a few facts about how amputees carry on productive, wonderful lives and how they are able to do whatever their hearts’ desire. We often tell others that Dylan’s foot is just like theirs; the only difference is that his doesn’t stink!
 Our family has been a member of the ACA for the past few years and we try to help advocate for them in any way that we can. We recently submitted opinion letters to multiple newspaper editors throughout Kansas in order to publicly support the ACA’s federal parity bill, which will be introduced in 2008. We have also written to our congressional legislator to urge him to support this much-needed bill. In the near future, we hope to start a foundation to help other families of amputees access the resources they need, as well as provide them with encouragement and support. We hope that others will follow in our footsteps, so that one day everyone will be able to access affordable prosthetic devices and repairs. Please join us in this fight for prosthetic parity!
To get involved in your state’s campaign for prosthetic parity, contact us at state@amputee-coalition.org or 202/742-1885. For information about the congressional effort, we can be reached at federal@amputee-coalition.org or 202/742-1886.
 The Jones family is speaking up by writing letters to their local papers. This is a simple thing you can do to make your voice be heard!
Send a letter to your local newspaper, urging lawmakers to support prosthetic parity.
Send us a copy of your letter, so we can track the number that are sent out. Sending a letter to the editor is a really easy way to help raise awareness and demonstrate support for parity.
TOTAL NUMBER OF STATES IN PLAY: 31
States with laws on the books: 7 (CO, ME, NH, RI, CA, MA, and OR)
States planning to introduce bills in 2008: 18 (PA, NJ, IA, NY, VA, TN, MI, IL, FL, IN, WA, MD, UT, CT, AL, LA, WI and MO)
States that are likely for 2009: 13 (OH, OK, TX, KY, GA, AZ, NC, NE, ID, DE, AK, VT and MT)
We will need the dedication and participation of activists in every state to pass the federal bill!
Utah: Tami Stanley has worked hard to knock on the doors of legislators and raise public awareness. She has been successful in getting letters printed in Utah newspapers by using the ACA’s Letter to the Editor guide. Additionally, Tami reached out to the Health and Human Services committee and arranged a hearing.
In September 2007, with assistance from the ACA, Tami presented testimony. The committee was extremely receptive to and impressed with her testimony, key points and data. Committee member Rep. David Litvack was compelled by her testimony and has agreed to sponsor a bill in 2008!
 Virginia: The Special Commission on Mandated Health Insurance Benefits held a hearing on November 29 and voted in favor of Senate Bill 931! The bill will now have the chance to be heard and passed by the Virginia General Assembly.
Chairman Ware had indicated that he was not supportive of the bill, but after many letters, e-mails and calls from ACA members and allies, he voted in favor of the bill.
The ACA would really like to thank the many volunteers who have been active on this bill. We would also like to extend our appreciation to Senator Pat Ticer, Peggy Papp and the staff at Virginia Prosthetics for all of their hard work!
We are holding an organizing meeting with Alaska activists in December. Several new states have popped up this fall. We are looking forward to the opportunity to push for parity from sea to shining sea.
Vermont: Senator Doug Racine, chair of the Senate Health and Welfare Committee, will be introducing a bill in 2008! Senator Ginny Lyons, who also serves on the committee, has agreed to co-sponsor the bill. Eileen Casey works in the news business and has worked diligently for the past year to find a sponsor.
New York will be reintroduced in 2008, but with the new commission review process we are considering alternate strategies, including an administrative track. We are meeting with the Deputy Superintendent of Health Policy in January.
 Tennessee: The parity bill was introduced for the first time in 2007. House Bill 2145 was referred to the Commerce Committee. Senate Bill 2147 was referred to the Senate Commerce, Labor & Agriculture Committee. Neither bill passed out of committee. The campaign committee held a series of meetings to build support throughout the summer. We are working with the state O&P association, a lobbyist and supporters for the reintroduction in 2008.
Pennsylvania: HB 317 was passed out of the House Insurance Committee in June. It was referred to the Pennsylvania Cost Containment Council. They held a public comment period that ended on October 30. Several of our activists and local partners sent in letters and testimonial in favor of the bill. They will come out with their report before the end of the year. Once the report is completed, it should move to the House floor for a vote.
Maryland: Delegate Heather Mizeur has agreed to introduce the bill. Delegate Peter Hammen, Chair of the Health and Government Operation Committee is drafting the bill and will be listed as a co-sponsor. We are finalizing a sponsor in the Senate. We held an organizing meeting in early December.
Washington and Alabama identified a sponsor to carry their bills. The Wisconsin legislation was submitted this fall. They will all be introduced in 2008.
New Jersey: The bill was passed out of the Senate Budget & Appropriations Committee on December 10 with the amendment requiring parity for the state employee health benefits program. There are only three legislative days left on the calendar. It must be voted on this session or it will die. That means we will have to start over from the beginning next year. That would be a huge step backwards after all of our hard work in 2006 and 2007.
What can you do to help with the state parity campaigns?
- Stay Informed. You can check out the status of the state campaigns on the “In Your State” page of our Action Center.
- Get Active. The Action Center includes a “Take Action” page, a “Volunteer” page and a listing of trainings and events.
- Donate. We need your support to keep this campaign moving. Visit the Action Center to donate to the campaign.
Check out our online Action Center for updates, organizing resources and much more (www.amputee-coalition.org/advocacy). You can also contact us at state@amputee-coalition.org for more information or to get involved.
New Year’s Resolution: Volunteer in 2008!
by Jeremiah Pérez, National Advocacy Specialist
The ACA’s advocacy department held the 2nd Annual Holiday Party and Awards Ceremony on Wednesday, December 12 in our Washington, D.C. office. The party and awards ceremony started last year as an opportunity to express our gratitude to the many individuals from the local area who give their time and effort to the national parity campaign.
Our volunteers are a big part of our advocacy initiative. The volunteer program officially kicked off last year. In that time, volunteers have helped by putting together fundraising mailings, entering petitions to garner additional support and calling ACA members to encourage turnout for events.
When the ACA held lobby days and rallies in New York, Pennsylvania, and Oregon during the past legislation session, volunteers helped to reach out to members and supporters in both states to encourage them to attend. Oregon eventually went on to pass their bill.
We have a monthly volunteer night as well as special events like the holiday party. We know that many of our volunteers come straight from their office to ours, so dinner and refreshments are provided at each event. We also have a volunteer recognition program. Volunteers who participate in three volunteer opportunities will receive a free movie ticket.
 At the recent gathering, two outstanding individuals were recognized for going above and beyond. Harry Freedman and Ginna Goodenow received an award for their time, commitment and service to the ACA.
Harry Freedman has been active and involved with the ACA’s advocacy department since the office first opened in June 2006. He has attended most volunteer events and helped start the Virginia parity campaign. When the Virginia bill came up for a hearing in Richmond, Harry drove a group of people down to the capitol. Whenever we have needed someone to step up and help in our Virginia efforts, he has been there.
Harry also supports the Super H 5K. This is a race that benefits programs to help people with disabilities participate in sports and recreation activities.
 Ginna Goodenow is a wife, mother of two, a business owner, and community organizer who still finds time to volunteer. She has helped the ACA spread the word about prosthetic parity through her many volunteer activities. She has also recruited friends from her church and community to help us out. Many of our regular volunteers first attended one of our events after being invited by Ginna. She really contributed to helping to grow our program.
Ginna is also the co-founder and event producer of Kicking for Kids Who Can’t, a fundraiser that benefits the Limbs for Life Foundation. Limbs for Life is a nonprofit organization that provides prosthetic care for individuals who cannot otherwise afford it. The event happens each fall on the National Mall. Over the past 2 years, Ginna and her team of volunteers have raised almost $80,000 for children in need of prosthetics. She is truly an inspiration to us all.
With 31 states in play and a federal bill on the horizon, we truly rely on the dedication of our volunteers to help keep the campaign moving. We look forward to growth and continued support in 2008.
Our monthly volunteer night is held on the third Wednesday of each month. We also have daytime hours available. For more information or to register for the next volunteer opportunity, contact us at state@amputee-coalition.org or 202/742-1885.
 The advocacy department has recently been expanding its coalition outreach. We have met with department directors, government affairs representatives and congressional liaisons at a variety of organizations in hope of gaining support for the federal parity bill. By forming these coalitions, we have begun to open doors to numerous resources as well as gain supporters and activists. We would like to send a special thanks to the following organizations. With their support, we will continue to reach out and educate people throughout the U.S. about the importance of prosthetic parity.
- Families USA
- American Physical Therapy Association
- American Academy of Family Physicians
- National Partnership for Women and Families
- American Association of People with Disabilities
- American Association on Health and Disability
- American Occupational Therapy Association
- Disability Rights Education & Defense Fund, Inc.
- National Association of State Head Injury Administrators
- Association of University Centers on Disabilities
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